Crap time and need info on methotrexate??

[LillyAlfie]

Iv written everything I need to say in this picture please read xx

[Tinksie]

Hi Lilly. Sorry you've had such a horrible time. I understand your reluctance to go on methotrexate and have been there myself. It can of course only be a decision you can make alongside your specialist but from a personal point of view I'm very glad I agreed to go on it. It is the first medication I have tried that makes a noticeable difference to my pain levels and improves my quality of life. I have 3 young children also and know how difficult it is to have any life for yourself between managing Lupus and family life. Methotrexate sounds scary when you read up about it but Lupus sufferers are usually on a much much lesser dose than when it is used for chemotherapy and I haven't had any problems. They monitor you closely with blood tests so if your body doesn't react well to it they can take you off it. Also by hopefully reducing the activity of Lupus you are reducing the risk of it impacting your body further. As with all meds, everyone is different but think about the positives and bear in mind that side effects sound awful even on the back of your paracetamol box! I'm not trying to trivialise what is a serious drug and it is a difficult decision but for me it is worth it. All the best whatever you decide. Love Tinksy x

[Dwilsher]

Hi, it's my husband who has the lupus and I'm speaking on behalf of his experience, his lupus was up and down for over a year but after going on the methotrexate his symptoms have all settled down. Being in this drug is no hardship and had helped him enormously so I think it's well worth trying. You have to be advised when taking a drug of all the side effects that could happen but these are usually quite rare, if you do everything that the doctor says you should be ok. He's been on it for months now and lupus still in remission. Hope that's been if some help.

[tired18]

Hi

I've been on Methotrexate for over 6 years now and it's no big deal when traveling. As with all Medication this has to be kept well away from children as it a nasty drug. On a positive note it really does help ease the symptoms. You only take it once a week, I take mine last thing at night and sleep through the nausea feeling. You have to take Folic Acid 5 days after you take Methotrexate, but if it makes you feel nauseous longer than 12hours asked if they will increase the Folic Acid to 6days

If you want to take it with you on a plane or boat just get prescription from your medic. Personally I've never been asked , they just said OK

Hope I have answered your questions if you want anything else just ask

[LillyAlfie in reply to tired18]

Did you drink on it? X

[tired18 in reply to LillyAlfie]

Hi

I don't drink now due to other meds but have had the odd glass of larger in the past

It's recommend that you severely limit alcohol intake as the blood tests check liver function

[Lucymay]

Hi LillyAlfie,

just thought l would add, that l have been on methx for 3 years now, and it has helped me a great deal, l got a bad flare a few months ago and my rheumy up it from 7 tablets to 8 tablets. Then when it had settle down a bit, it was decreased back to 7 , l have not had any nausea and no side effects at all. I do hope if you do give it a try, it will help you too. Hope this will help you to decide. Lucymay

[Rachael23]

I've just recently started on metho, 2weeks ago. I was very reluctant at first but as I had a flare up I decided to give it a go. So far no problems to it, I am upping the dosage this week which may change things but I will have to see. My skin has been much better since being on it, and I haven't had any sign of feeling sick or unwell of them. If they don't work for you they will give you something else to try I'm sure. Hope this helps you make a decision xx

[jimsalisbury12345]

hi wish you allthe very best ive dif condition psoriatic artitus itake imune supresent every day old one been about long time no reaction to that thaysay should take anti inflam everyday idont only whenpain bad have saide effect long termuse can cause lot dif help problem iwish you allthe very best jim salisbury woof woof from my dog paddy

[Terrier_Lady]

Don't be afraid to try MTX. I started the injections about a month ago, I'm also on prednisone, plaquenil, Celebrex, and monthly benlysta infusions. We had to add it as the benlysta was stabilizing my lupus but then I went thru a bad flare and got worse and the infusion would wear off before the month was up and I would flare so badly. I was afraid to start the MTX from reading about the side effects and my risks are higher because of all the other stuff I'm on. But now I'm so happy I did. It can take a few months to get full benefits but even just being a month is my lupus is so much more under control and it has eased a lot of my symptoms. We went straight to injection form and skipped the pills because so many at my infusion center said the pills made them really sick and the injections are more effective. The first week I felt a little nasaue and achy, but each week has been better. I just had my injection this morning and feel ok other then a little extra tired. Usually by the 2nd day the extra fatigue and weekness is gone but my lupus symptoms are so much better. For me lupus had taken most of my life away, it has almost totally disabled me to the point I couldn't even do my hair or go out unless hubby takes me in my wheelchair. Since being on the MTX I have been able to cut and color my hair. I used to be a hairstylist. Been able to move around the house more. So hoping it will continue to stop the damage to my body and maybe I'll be able to start getting out without the wheelchair soon. It's amazing for me to even have the strength to do my hair or put on any makeup. And I've been able to, granted I have to sit down mostly while I do it but still huge improvement. My joint pain is less, and I'm not longer running fevers constantly. So it's definitely worth a try and I'm not totally sure what all you mean by the stuff you have to give up. The only things I can think of I already lost to lupus. Like protecting yourself from the sun and not drinking. I already couldn't drink with my other meds. And the only extra thing is blood work about every 3 months. For me it's no big deal as they were already doing that when I went for infusions. So if it helps you like it's helped me it will give you some of your life back not put more restrictions on it. Hope you find something that works.

[Terrier_Lady]

Oh I also forgot to tell you that the folic acid reduces side effects and hairloss. It's just a vitamin and won't hurt you. I take it everyday now. My rheumy says the reason for hairloss due to MTX is that it causes a loss of folic acid. So he put me it when I started. He said if I was having sickness or hairloss to increase the folic acid and it would help.

[LillyAlfie in reply to Terrier_Lady]

Is that the bilaista drug you have I can not spell it lol? The one nice have just ok'd

[Terrier_Lady in reply to LillyAlfie]

Yes I get Benlysta infusions every 4 wks. I've been on it for about a year and half. It was working really well until I went thru a bad flare and caused my SLE to progress. Then we increased my dose and I was going every 3wks. But this year insurance wouldn't pay for that and cut me back to only 12 treatments for the year. So that's why we decided to add the MTX injections. To kind of try and bridge the gap. For me the benlysta really helped me be not as sick and not have as much damage to my body. But I'm told my SLE is strange with a lot of overlapping issues so it's very hard to control. For other people at my infusion center just doing the infusions every 4wks with the other minimal lupus meds has given them their life back. Definitly worth a try. The side effects weren't bad and your body gets used to it as you go along. I never had to pretreat with Benedryl or anything. Hope it works for you.

[LillyAlfie in reply to Terrier_Lady]

Oh ok I'm in the uk, struggling to get the drug now thank you for giving me so much info xx😘😘